The self I will never know: Esther Morris, born with an intersex condition, writes about the scandal of 'corrective surgery' whereby thousands of children are mutilated without consent - Sexual & Gender Diversity

New Internationalist, Jan-Feb, 2004 by Esther Morris

THERE are times when I wish I didn't know so much. And I realize that what I know, I learned too late. Reclaiming a childhood of medicalization can be challenging at best, but key to my survival. The challenge is not that I was born with atypical reproductive anatomy--but the power of others to question and correct my natural anatomy.

My treatment became white-coat violence the moment I lost my choice. The reason for 'corrective treatment' is to prevent emotional trauma associated with diverse anatomy. Yet quality of life and emotional support were never part of my care. Living in a body that raised all these questions left answers beyond my reach. Medical treatment is focused on correcting intersex variations, not advice for living with them.

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I was not told of the frequency of intersex--it's actually more common than cystic fibrosis. At the age of 13, I was scheduled for surgery. I was not allowed to accept myself; I was told what is normal and how I should be. I was never told that I was viable; or that who I was is all I had to be.

Once deemed a 'medical success' I was left to feel that I had drastically failed, because corrective surgery did not make me feel normal. My feelings became irrelevant and I have feared success from that moment on. I survived by denying I had any feelings at all. My body was altered to meet social values, but my values were never discussed. My puberty was focused on vaginal function before I had a chance to care.

Children who don't conform

Every day throughout the world children are born who challenge social values. And every day the response has been to make those children conform. This is not about children in medical crisis, but about children who are intimately invaded because their genitals aren't 'up to standard'. These kids are called intersex. Their genital or reproductive anatomy is treated as an emergency that must be corrected immediately. Genital variation is not medically threatening, but cosmetic surgery is the medical standard in most 'civilized' societies. In the United States alone, genital surgeries are performed on at least five children every day, probably more. Many will have to have surgery repeated several times throughout their lives.

In the year 2000 the American Academy of Pediatrics issued a statement that 'ambiguous genitals', the global term for intersex, constitutes an emergency. In fact, intersex includes anyone born with atypical genital or reproductive anatomy. Treating an emergency does not require parental consent even when cosmetically derived. This brings to light some curious questions about what is atypical, and who has the right to decide what acceptable genitals are. Are medical professionals standing by with rulers and stamps of approval? To some extent they are, and we are all subject to their judgement. The majority who pass are sent on their way; but, for the sacred few who don't measure up, the silent nightmare begins.

Intersex occurs as often as once in every 1,000 to 1,500 live births. Incidence is unusual, but not rare. Treatment refers to medical intervention to make atypical genital or reproductive anatomy normal. Normal is defined by medical standards determined by anatomical dimensions. The medical criteria for genital and reproductive anatomy are: a clitoris cannot be larger than 3/8 of an inch at birth ... Or ... visible? The recommendation is that an 'enlarged' clitoris be surgically reduced to match the medical standard. A penis is 'too small' if it cannot be stretched longer than one inch at birth. The recommendation for a child with a penis considered too small is to reassign the child female, and then create typical female anatomy. An 'adequate' vagina is one that will accept an average size penis. When a vagina is 'inadequate' various treatments are recommended to promote heterosexual intercourse. Medical treatment is deemed successful once these intimate dimensions are met.

Losing sensation

The caveat of current protocols is that adults who have received successful treatments claim a loss to their quality of life. Others lose sexual sensation as a result of removed, reduced, enlarged or scarred genitals, in addition to loss of self. People are generally too young or traumatized to make the immediate decisions required upon discovery, so parents and providers are left in charge.

Treatment histories are not always disclosed, so children grow up in confusion. Since treatment is irreversible and permanent, discerning what is important to the child is essential for the parents or physicians who wish to do no harm. How can we ascertain what is best for the child when they are still too young to speak?

The medical community believes people will be traumatized by their atypical anatomy and need corrective treatment to lead happy and healthy, or normal, lives. Many adults argue that correction creates its own stigma that leaves them struggling with identities and loss of self. The growing number of support groups and patient advocacy groups (currently 3,012 appear in an internet search) endorse the position that corrective treatment does not resolve the issue of psychosocial adjustment.